Data Protection and Privacy

Debate between Lord Ashton of Hyde and Baroness Hayman

Monday 5th February 2018 Lords Chamber

[Lord Ashton of Hyde]

I do not believe that that is the case although I cannot give an absolute guarantee because I am not sure of my facts. One thing that the Digital Economy Bill did was to outline what Governments can do with their own data. They can use it within government. The general data protection regulation makes the issue of consent much more explicit. Consent has to be genuine consent.

[Baroness Hayman (CB)]

My Lords, will the Minister add the National Health Service to the list of organisations that need to be involved? Does he agree that within the National Health Service there is an enormous amount of data that could be of fantastic benefit to medical research? It can be anonymised. It may be, for example, that in cohort studies people have already given their consent to that data being used. I declare my interests, as set out in the register. Will he agree that there can sometimes be a misunderstanding of the extent of data protection, which could act as a real obstacle to the sort of research that we all want to see?

[Lord Ashton of Hyde]

That is the subject of the amendment to the Data Protection Bill of the noble Lord, Lord Mitchell. It gives a good example of the sort of thing that the Centre for Data Ethics and Innovation could consider. On the one hand, the National Health Service has an unparalleled amount of medical information that could be used to advantage. On the other hand, if it is monetised and sold on, which has the superficial attraction of providing money for the NHS, it could prevent researchers using that information in the same way that pharmacological organisations do. It could actually prevent health benefits occurring. It is a classic example of an ethical dilemma that the centre will be able to look at.

Data Ethics Commission

Debate between Lord Ashton of Hyde and Baroness Hayman

Monday 10th July 2017 Lords Chamber

[Lord Ashton of Hyde]

That is of course important, and the data protection Bill will include measures to protect children and to allow data which is held by social media companies, for example, to be deleted. As for engaging children in considering these ethical issues, that is something that the data commission can consider but, as I said, we have not yet been specific about the structure, function and remit of the commission.

[Baroness Hayman (CB)]

My Lords, I declare an interest as chair of the ethics and governance council for UK Biobank. Does the Minister agree that the potential value in health of the use of big data—in the development of new medicines and other fields—is enormous? In view of that, will he ensure that the interests of medical research are included in the commission’s terms of reference, given that it is essential that the public have trust in the systems governing the use of their information?